Please give opinion or advice, not yet diagnosed.

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Veteran Member

Date Joined Aug 2005
Total Posts : 558
   Posted 1/15/2006 8:56 PM (GMT -6)   
I'm a 26 year old female who's been out of work for a month now with incapacitating pain in my joints and back.  It started out in my fingers, feet, knees, hips and elbows, but one of my chief complaints is my back, at this point.  I am exhausted and have a general blah feeling.
My father was diagnosed with RA about 15 years ago, in his late thirties or early forties. 
This past summer, I had a condition that mimicked Lyme disease very much, that's why, I'm not a new member here, I used to go on the Lyme forum.  But in the end, my condition went undiagnosed, and doctor just said it was a viral type illness and cleared up in a little over a month.  During that time, I had some aching in the joints, an elbow or a knee at times.  It would just be on one side, unlike now where it hurts on both sides.  The reason I am even mentioning it, because I know it's unrelated, is that since it was undiagnosed, my GP ordered a lot of tests.  Lyme, RA, Fibromyalgia, Lupus, Complete Blood Count, etc.  I tested negative for about everything under the sun. 
Many months went by, I felt great.  Then halfway through December I developed this pain that I've never felt in my life.  I went back to see GP.  He said that it could very well be RA, but since I just tested negative in the summer, he didn't bother to retest, but referred me to a rheumy doctor, who I have to wait to get into. I will see the specialist a week from Monday. GP has prescribed Celebrex for now.
I have stiffness in the morning, a general feeling of unwellness, and overnight I went from 26 years old, to about 100.
I am scared for a couple reasons.  I'm scared it might be something even worse than what I was thinking, and I'm scared that I won't go back to 'normal' or anything near it, and I was planning on conceiving for the first time in the near future and am afraid I will no longer be able to.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/16/2006 12:19 PM (GMT -6)   
Hol, I think a lot of people have been in your shoes. I post a lot on the lupus forum and a lot of us are waiting for a diagnosis. I had been sick on and off a lot of my adult life and doctors couldn't find a lot wrong in their bloodwork. Then about 2 years ago I got really sick with that general feeling of unwellness, terrible fatigue, and pain. Initial bloodwork then showed a positive ANA which can indicate lupus or other autoimmune diseases. Over time I started developing more lupus symptoms and my rheumatoid factor is borderline. I have an aunt with RA and although she had it for a long time, it didn't show up in her labs until she was in a really bad flare. Fibromyalgia can also make people feel very sick and can be debilitating, but nothing shows up on bloodwork.

It's good that you are getting into a rheumatologist. Hopefully some of your bloodwork will be repeated because it can change. I know how scary this can be. I have felt so sick at times that I was sure I was going to die. Fortunately most of these diseases can be treated and people usually live long lives and there is always the hope of remissio.

I hope you get some answers soon and that you can get some relief from your symptoms. Take care and make sure to post after your appointment.
Dx:  Suspected Lupus 2004, CFS 1991
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 300mg

Veteran Member

Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 4:53 PM (GMT -6)   

hi Hol,

getting to the bottom of things is so stressful and discouraging much of the time.  i read your post & my heart goes out to you.

what did they do to treat the "lymes"?  antibiotics? antivirals?  had they ever mentioned Guillan-Barre syndrome?

also, along with a rheumatologist...have you thought about a consult with a neurologist?  have you had an EMG, EEG and a brain MRI yet?

hang in there.  we're all here for you.

the best to you.



Regular Member

Date Joined Jun 2005
Total Posts : 303
   Posted 2/3/2006 12:49 PM (GMT -6)   
i can relate too. I have been having incredible pain in my shoulders for the last few months. I've tried everything to relieve the pain from OTC meds to hot baths, heating pads. The heat helps the most. My back has been bothering me too around the lower region. I wake up feeling stiff and sore and I haven't had any accidents that would cause this pain. I have been a little timid about mention this to my doctor as well for the fear I'll get laughed right out of the office. I know something is going on because a i'm not an aches and pain kind of person. I'm not one to complain about pain and generally most minor aches and pains go away but not this. It has been lingering for some time now. Sometimes one shoulder like this week it seems to be my left shoulder and then sometimes both shoulders will bother me. I've noticed its starting to affect my daily activities running earends even cleaning. Their will be some evenings I get home from work and just be hurting and to stiff and sore I can't seem to get the cleaning done. That's really not like me to have something slow me down like that. Plus I don't want to go to the doctor mention this to him and with my luck in a couple of weeks have it temp go away. I feel for you I do. I feel the same way I feel like I'm a 31 year old trapped in about a 50 or 60 year old body a lot of times.
My hands and arms ache to but that maybe carpal tunnel related. I do work on the computer a lot at work so some of my back and shoulder pain could be related to that I know but I've tried adjusting everything from my chair to my keyboard to the work station itself and nothing seems to help. I've just recently started using a heating pad on my shoulders when I get home cause they bother me that much. Hang in their and maybe we'll both figure out what to do or get some answers. I plan on mentioning this to my doctor when I see him in a couple of weeks. I just hope he takes me seriously.
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